Living with multiple sclerosis: One woman’s valiant battle with MS

Published at 9:17 am, September 15, 2017 |

Updated at 9:17 am, September 15, 2017

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Colleen Howard and her husband, Terry. | Courtesy photo

Editor’s note: This article is the first of a two-part series focusing on multiple sclerosis and its effects on those suffering from this debilitating disease. Colleen Howard passed away May 8, 2017, after fighting a courageous and painful battle with MS.

This article was written before that time and is posted here as a tribute in conjunction with the annual Walk MS: Idaho Falls, 2017 to be held at Snake River Landing on Saturday, Sept. 16, 2017. Registration begins at 9 am. You can find more information here.

IDAHO FALLS — The day starts the same way it did yesterday and the same way it will tomorrow.

Except for the days that her husband is home, every morning at 9 a.m. Colleen’s mother, Joy, comes to begin the morning rituals. The two, daughter and mother, work together like a fine-tuned engine, each knowing what to do in perfect sync. Mother tends to duties that her wheelchair-bound daughter used to accomplish with grace and ease.

Colleen Howard was diagnosed with multiple sclerosis in 1994. Her backaches were attributed to a car accident she had suffered a couple of years earlier but she knew there had to be more to the pain. Finally, a family doctor suggested she see a neurologist. The spinal tap and the MRI ordered by the specialist offered the diagnosis but the finding was bittersweet.

“At first, I felt complete relief because now there was a diagnosis, and I really wasn’t a hypochondriac,” Colleen said. “There really was something wrong.”

The severity of it hit, though, when she got home and her fears were realized. How was she going to raise five children? What was going to happen to her family?

Multiple sclerosis is an autoimmune disorder that attacks the myelin sheath of the central nervous system, according to the National Multiple Sclerosis Society.

“The body’s own defense system attacks myelin, the fatty substance that surrounds and protects the nerve fibers in the central nervous system,” according to the organization’s website. “The damaged myelin forms scar tissue (sclerosis), which gives the disease its name. When any part of the myelin sheath or nerve fiber is damaged or destroyed, nerve impulses traveling to and from the brain and spinal cord are distorted or interrupted, producing a variety of symptoms.”

And the disease is progressive, meaning that although some people experience symptoms for a short period of time and then they go away for months or years, for others the disease just gets worse every day, according to Multiple Sclerosis Association of America.

A 2007 report from the MSAA shows that some 400,000 American face the prospect of losing functionality through the physical, cognitive, and psychological limitations caused by MS. There are also 10,000 new cases diagnosed in the United States annually.

Whether the car accident was the cause or just the means to a diagnosis of multiple sclerosis no doctor will confirm, but in Colleen’s mind this is where it all began.

She suffered whiplash at the time of the crash, so it seemed bizarre that the pain and irritation in her back would not go away.

Eventually, she experienced numbness down her legs. By 1996, Colleen had lost the use of her left side. It came on quite suddenly. She noticed that that side was getting weak and before long she was walking with a cane, and she had to drag her left leg along.

Fatigue caused by the ailment would often rob Colleen of precious days. Each step in the progression of the disease proved to Colleen just how dependent she was becoming and how much of her independence had been taken for granted.

Greg Winn, a former occupational therapist at Bingham Memorial Hospital, said there are many issues that need to be addressed with individuals who have lost mobility and independence because of MS.

“The loss of independence can be the greatest challenge to the individual who has led an independent life before the disease. The daily functions that can be lost are tasks as simple as brushing teeth, washing face, toilet hygiene, cooking, cleaning, getting the mail, shopping and home management,” he said.

Winn said this leads to the realization that the patients needs to be more dependent on others to live. But helping them remain as independent and mobile as possible is one of the main goals of occupational therapy for MS patients.

“We must consider that what the individual needs is to have some kind of control over their lives. They want to maintain the power to make decisions. They want the power to do. That is the quality of life we are striving to help them maintain in the safest way possible,” Winn said.

It did not seem too out of the ordinary the night of Friday, April 20, 2007, that Colleen slept through the night and the next day. Her husband, Terry, recalls becoming worried by Saturday night and taking her to the doctors at Community Care.

She was unresponsive, but Colleen does vaguely remember the visit. By Sunday night, still out of it, Colleen lost bowel control and her husband knew that this time something was definitely wrong. By the time she was admitted to the ER, Colleen’s lungs had failed and her kidneys were almost shut down. The doctors did not give Terry much hope that she would make it through the night.

Colleen was placed on a ventilator and packed in ice to control her high fever. She was comatose but recalls her first conscious memory on May 27: “My daughter, son-in-law, and granddaughter with her huge blue eyes were looking down on me.”

She was still in and out of consciousness for a long time.

It was mid-June when she finally became alert and awake. She says with a smile, “It was a Sunday. There were so many people in the room and they were talking about me like I wasn’t there. I wanted to scream and tell them all to get out because they were making too much noise.”

The next morning a doctor entered her room and removed the blankets from her feet.

“I saw the most beautiful shade of turquoise I had ever seen and realized that it was my toes,” she said.

Gangrene had set in and without tact, the doctor said, “Toes are going to have to go, most possibly the foot and up the leg, probably this hand and fingers on the other.” She was scheduled for surgery the next morning. Colleen remembers lying in bed, sobbing and begging her mom not to leave her. She said, “It was like I was a child again and just needed my mom to stay with me.”

The surgery was performed on her limbs and Colleen awoke with only a partial right foot and one hand. After much therapy and more pain than she could have ever imagined, Colleen was eventually moved to the step-down unit. She was there for 10 days when she told her doctor that if he left her there she would die. She wanted to go home. It took some coaxing and a lot of hard work but the doctor finally agreed to release her, in a wheelchair, to the care of her husband and mother. Colleen’s life in her home would never be the same.

When asked what this has taught her, Colleen said, “Blessings are what get you out of bed and keep you going day after day.”

And that is what she does. Colleen keeps going day after day, serving and loving, all with a smile, despite what MS has done to her life.